Leeds children's heart unit future in jeopardy

The children's heart unit at Leeds General Infirmary may be shut down after data analysis found its death rates to be unacceptably high

Questions were raised about the Leeds children’s heart unit two years ago, when there were concerns that more children than usual were being left with brain damage from their heart operations. Photograph: Anna Gowthorpe/PA

Wednesday 3 April 2013 19.02 EDT
First published on Wednesday 3 April 2013 19.02 EDT

The future of the children's heart unit at Leeds General Infirmary, where surgery was suspended last week, is in doubt following an analysis of data on operations which the hospital had previously failed to submit and which shows that its death rates are unacceptably high, the Guardian has learned.

This analysis looks at crucial data that was originally missing from the hospital's submission to the central cardiac database: in 130 heart operations, the weight of the child was missing so those cases were not properly accounted for in the death rate. This information has now been submitted by the hospital but, it is understood, the revised figures have not reduced mortality to a safe level.

On Thursday, a risk summit has been convened in the city by NHS England, to be attended by the Care Quality Commission, which will discuss the next steps. The meeting will also consider other concerns, including the number of surgeons available in the unit.

The Guardian has also learned that a Dutch surgeon was being paid by the Leeds Teaching Hospitals NHS Trust to fly in from her job in Aarhus, Denmark, to operate one weekend a month – a highly unusual move in this very specialised medical field. The trust says the surgeon, Catharina Van Doorn, is "providing additional capacity" and "has a particular set of skills".

Surgery at the hospital was suspended last week after the NHS medical director, Sir Bruce Keogh, travelled to Leeds to voice his concerns over issues including death rates and the number and expertise of surgeons.

At the time, the unit was being staffed by two locum consultant surgeons. One of the two senior surgeons in the unit has voluntarily withdrawn from operating because of questions over his ability. The other was on holiday.

Keogh went to Leeds after he was shown some worrying figures by the former heart tsar Sir Roger Boyle, who now runs the National Institute of Cardiovascular Outcomes Research (Nicor), which oversees cardiovascular mortality data across the NHS. The data showed Leeds child heart surgery mortality was twice the national average. He had also separately been contacted by two senior surgeons from other units who were concerned about staffing and expertise at Leeds.

Leeds took Keogh's advice to suspend surgery, but consultants and supporters of the unit, including the archbishop of York, John Sentamu, and local MP Greg Mulholland, immediately went on the offensive.

A Leeds cardiologist, Elspeth Brown, told the BBC at the weekend that the figures showing mortality at Leeds was high were "simply wrong, they were incomplete … We've been looking very hard at the figures over the last three years and we are confident that our mortality figures are well within what would be expected".

But there were gaps in the data because the Leeds unit had failed to send in all the figures required. In these 130 operations, they had not recorded the weight of the child, which is crucial to an assessment of the chances of survival. In 18 cases, Leeds submitted no information about the surgery at all.

The Guardian has learned that adding in the weights of the children in the 130 cases has not made a difference . Leeds is a statistical outlier with a mortality rate outside the expected and acceptable range. Experts believe that even when the other data is submitted, the unit's performance is unlikely to improve.

The data has for the first time been risk-adjusted by Nicor, to take into account factors such as other health problems that could make the child more likely to die. It is using new software devised by University College London, which allows surgeons to review their success rates from month to month, allowing them to work out what is going wrong if they have a series of deaths, and act on it promptly. A paper describing the success of pilot studies at Great Ormond Street, Evelina children's hospital and the Royal Hospital for Sick Children in Glasgow is published on Thursday in the journal Heart.

Leeds declined to comment on the new analysis, but indicated that it has doubts about the methodology.

Questions have been raised about the Leeds children's heart unit in the past. The Children's Heart Federation, an umbrella group for many small organisations supporting families, contacted the Care Quality Commission two years ago because of concerns that more children than usual were being left with brain damage from their heart operations. "Parents were phoning us saying we need some more help from social services or from education. We began to build up a picture of the outcomes not being as good in Leeds," said director Anne Keatley-Clarke.

It was, she admits, "very, very soft evidence", but they submitted it to the CQC. They were also hearing that more parents at Leeds were being told their children could not be treated than elsewhere. "Some parents have asked for a second opinion and that has been made quite difficult for them," she said.

One mother, Holly Pearson, was told that there was nothing more Leeds could do for her baby son George, following an operation for a congenital heart defect at eight weeks old. He was placed on a palliative care pathway, she told the Daily Mail. Pearson's mother, Nicola Garbutt, had talked to other parents and insisted that Leeds transfer George to the Freeman hospital in Newcastle. Surgeons there told the family that George's condition was operable and he is now recovering from surgery.

Supporters of the Leeds unit, who include many parents who feel strongly attached to it after life-saving heart operations on their babies, are convinced that Keogh's advice to suspend surgery was a political manoeuvre. It happened one day after the campaign group Save Our Surgery won a judicial review in the high court, which it had brought against the Safe and Sustainable NHS review that decided Leeds should be one of three children's heart units to close. Fewer units are needed because the numbers of children with heart defects are relatively few and surgeons need to carry out a minimum number of operations to keep up their skills.

Sharon Cheng, director of the Children's Heart Surgery Fund campaigning to keep Leeds open, denies there are any excess deaths and insists that children are regularly referred to other hospitals where necessary. "We have had an onslaught of these complaints since our court case," she said. "If these issues were there, they should have been made a long time ago. There is no case to answer. We have to look at why this has been done and we have to look at the timing. It concerns me. We had just won our court case and within 24 hours they suspended surgery."

• This article was amended on 4 April 2013. The original called Nicor the National Institute of Clinical Outcomes Research, and said that it oversees mortality data across the NHS. Nicor is the National Institute of Cardiovascular Outcomes Research, and oversees cardiovascular deaths, not all mortality deaths. The original also said that "the hospital won a judicial review in the high court, which it had brought against the Safe and Sustainable NHS review"; the judicial review was brought by the campaign group Save Our Surgery, not the hospital.